I find this post very interesting. Only in remission for about six months now I rarely find myself worrying about the relapse. Lets face it, the stats don't lie, all but a few of us will die from this disease. Like John noted I think you recognize your mortality and realize the "party" does not last forever. Sure it would be nice to hang around longer but when your number comes up there is nothing we can do. What we can do is live each day to the fullest and don't waste the time thinking about relapse or death. There will be enough time to think about that when you do actually relapse.
For me its kind of a gift to recognize that you are are going to die early. It makes planning the rest of your life easier and allows you the drive to do some of those things you've put off. It also helps your spouse work through the process of knowing that she'll be alone at some point. My wife now engages in everything I do around the house so she can learn how to do those things that I typically did all these years. You can make better financial decisions now that you know you're here for the short term.
Ya it sucks we got this disease. We're not alone, many people are suffering from disease around this world. There is little we can do to change the outcome, that's up to the grand poo baa. But, if its a good day I'm going ATV'ing, camping, boating and spending time with the kids. Your wasting good days if you spend them worrying!
Good luck to you all, Jerry.
Forums
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Question do you think about multiple myeloma if your in
For me, multiple myeloma is always there at the back of my mind. I've been in remission just over a year now and still go to the doctor for blood and routine checks every 2 months. Each time I am certain that this test will "be the one" that shows some evidence of relapse but so far, everyone of them has been normal.
Given the historical data on relapse rates, I view it as a question of when, not if I will ever relapse. So my goal in life is to make sure I take full advantage of the time I have being off treatment and feeling well. If I don't ever relapse, then I am a lucky son of a gun!
Given the historical data on relapse rates, I view it as a question of when, not if I will ever relapse. So my goal in life is to make sure I take full advantage of the time I have being off treatment and feeling well. If I don't ever relapse, then I am a lucky son of a gun!
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: Question do you think about multiple myeloma if your in
I have been in remission for 4 years but am on maintenance therapy and like others have a weakend immune system so am on IVIG as well.
I work full time, sing in my church choir and am an avid bicycle rider and love to compete and push myself.
If you looked at me and my activites you would never know that I have cancer.
All of those activites help to keep my mind off of the what ifs. But it is always there since the disease is always present even if tamped down and held at bay.
The treatments I get once every two weeks are the constant reminder that although I am doing very well, I am not well.
I just don't dwell on it. It suits no purpose. I try and stay positive and concentrate on living life to the fullest.
Ron
I work full time, sing in my church choir and am an avid bicycle rider and love to compete and push myself.
If you looked at me and my activites you would never know that I have cancer.
All of those activites help to keep my mind off of the what ifs. But it is always there since the disease is always present even if tamped down and held at bay.
The treatments I get once every two weeks are the constant reminder that although I am doing very well, I am not well.
I just don't dwell on it. It suits no purpose. I try and stay positive and concentrate on living life to the fullest.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Question do you think about multiple myeloma if your in
I'm in Stringent Complete Remission after 3 cycles of VRP. Do I dwell on it, no. It hasn't effected anything I do. Nor has my treatment. I may be one of the luckier ones.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Question do you think about multiple myeloma if your in
Hi Libby,
Would you please share what treatment your myeloma specialist has suggested if you come out of remission?
Thanks, and best of luck.
Lin
Would you please share what treatment your myeloma specialist has suggested if you come out of remission?
Thanks, and best of luck.
Lin
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Lin
Re: Question do you think about multiple myeloma if your in
Hi Lin,
I don't know if you are aware that I had an allograft. At present I am on prednisolone, plaquenil and cyclosporine - all immunosuppressors that keep my chronic GVHD at bay. Unfortunately they don't really have an effect on myeloma so the possibility of coming out of remission is very real. If/when the myeloma starts growing again the first line of defence will be to decrease the immunosuppressors (gradually). The second line of defence would be to give me another DLI (donor lymphocyte infusion).
My chronic GVHD is on the fascia of my muscles which restricts muscle movement. I have been decreasing the prednisolone for the last couple of months and monitoring my range of motion - hopefully to get to the smallest dose I need to take (I have a big puffy face at the moment) while keeping the GVHD at bay.
All the best,
Libby
I don't know if you are aware that I had an allograft. At present I am on prednisolone, plaquenil and cyclosporine - all immunosuppressors that keep my chronic GVHD at bay. Unfortunately they don't really have an effect on myeloma so the possibility of coming out of remission is very real. If/when the myeloma starts growing again the first line of defence will be to decrease the immunosuppressors (gradually). The second line of defence would be to give me another DLI (donor lymphocyte infusion).
My chronic GVHD is on the fascia of my muscles which restricts muscle movement. I have been decreasing the prednisolone for the last couple of months and monitoring my range of motion - hopefully to get to the smallest dose I need to take (I have a big puffy face at the moment) while keeping the GVHD at bay.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Question do you think about multiple myeloma if your in
Just got call from doctor with last weeks blood test. Kappa light chains have gone down to 40 from 124. He feels its because I was put back on steroids along with the Revlimid. I had been taken off of everything to prepare for stem cell harvest. After harvest was just put back on Rervlimid. Will not say if I am in remission without a bone marrow biopsy which he will do in Nov..
I hate what the steroids do to me I get shaking and really nasty but if they work I will continue to take them and try to smile my way thru the four days after taking them.
I hate what the steroids do to me I get shaking and really nasty but if they work I will continue to take them and try to smile my way thru the four days after taking them.
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morrow1022
Re: Question do you think about multiple myeloma if your in
Im in total remission for over two years. I think about it everyday. But, I dont worry about it. That I think is the difference. It's there and I know it, but I'm gonna keep beatin it back down whenever I need to........
Re: Question do you think about multiple myeloma if your in
I am only two months into remission (no SCT) and on dex and Velcade maintenance given every two weeks. Yes, relapse is a concern and not thinking of that possibility would be living in denial. However, I focus on the present. It is the only certainty anyone has in life. I appreciate and make the best of the moment and that overcomes my worries about the future.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
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